New or existing Patient-Powered Research Networks (PPRN) comprise patients and/or caregivers who are motivated to build an ideal network and play an active role in patient-centered comparative effectiveness research.
- American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network)
University of South Florida - ARthritis patient Partnership with comparative Effectiveness Researchers (AR-PoWER PPRN)
Global Health Living Foundation - CCFA Partners Patient Powered Research Network
Crohn’s and Colitis Foundation of America - Collaborative Patient-Centered Rare Epilepsy Network (REN)
Epilepsy Foundation - Community Partnered Participatory Research Network (CPPRN)
University of California Los Angeles - Community-Engaged Network for All (CENA)
Genetic Alliance, Inc. - COPD Patient Powered Research Network
COPD Foundation - DuchenneConnect Registry Network
Parent Project Muscular Dystrophy - Health eHeart Alliance
University of California, San Francisco (UCSF) - ImproveCareNow: A Learning Health System for Children with Crohn’s Disease and Ulcerative Colitis
Cincinnati Children’s Hospital Medical Center - Interactive Autism Network
Kennedy Krieger Institute - Mood Patient-Powered Research Network
Massachusetts General Hospital - Multiple Sclerosis Patient-Powered Research Network
Accelerated Cure Project for Multiple Sclerosis - National Alzheimer’s and Dementia Patient and Caregiver-Powered Research Network
Mayo Clinic - NephCure Kidney International
Arbor Research Collaborative for Health - Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium
Duke University - Phelan-McDermid Syndrome Data Network
Phelan-McDermid Syndrome Foundation - PI Patient Research Connection: PI-CONNECT
Immune Deficiency Foundation - Population Research in Identity and Disparities for Equality Patient-Powered Research Network (PRIDEnet)
University of California San Francisco - Vasculitis Patient Powered Research Network
University of Pennsylvania